Exploring the Association Between Barriers to Care in Children With Thalassemia Major and Their Parents’ Perceptions of Primary Care and Quality of Life in Kerman in 2015

Background and Objectives: The aim of this study was to explore the relationship between barriers to care with parents’ perceptions of primary care and quality of life in children with thalassemia major in Kerman, Iran. Methods: A cross-sectional study was conducted in 2015. The sample included 150 children aged 6 to 15 years with thalassemia major and one of their parents. Data were collected using 3 standardized questionnaires: barriers to care questionnaire (BCQ), parents’ perceptions of primary care (P3C), and the pediatric health related quality of life (PedsQL). To determine the association between demographic characteristics and barriers to care t test and ANOVA were used. Correlation coefficient was used to determine the relationship between barriers to care and parents perceptions of primary care and health-related quality of life. Results: The mean (SD) of BCQ was 63.93 ± 9.08 (out of 100), and the mean (SD) for parents’ perceptions of primary care (P3C) was 51.12 ± 17.98 (out of 100). The mean score of health-related quality of life (PedsQL) reported by the children and their parents were 41.01 ± 22.38 and 40.63 ± 21.04, respectively. Perceived barriers to care was significantly associated with parents’ perceptions of primary care (P < 0.0001), health-related quality of life reported by children (P = 0.021) and parent-reported of quality of life (P = 0.020). Conclusion: This study provided important information for policy makers, managers, doctors, nurses and other health care team members and may help them to develop and implement effective interventions to support children with chronic diseases and their families.